Opening plenary • Chair: • Andrew Morris, Director, Health Data Research UK • Welcome address: • Patrick Vallance, Government Chief Scientific Adviser and Co-Chair, Scientific Advisory Committee for Emergencies (SAGE) This session will start at 09:30BST. Please use the Q&A function to ask questions to speakers. You are welcome to comment using the chat function, but we cannot guarantee this will be monitored.
How UK health data research has pivoted for COVID-19 • Andrew Morris, Director, Health Data Research UK • Caroline Cake, Chief Executive Officer, Health Data Research UK
HDR UK’s mission is to unite the UK’s health data to enable discoveries that improve people’s lives Our 20-year vision is for large scale data and advanced analytics to benefit every patient interaction, clinical trial, biomedical discovery and enhance public health. | 4
To achieve this our strategy focuses on uniting, improving and using health data…. | 5
…delivering through the Gateway, Alliance and Hubs…
…and through 6 national research priority areas | 7
….and the institute is continuing to evolve to deliver this strategy 2019 2020 2017 2018 INCEPTION SUBSTANTIVE SITES GROWTH GROWTH • 10 funders • 6 Research sites with • 30 Alliance members • >20 Alliance members • 8 hubs with > 100 partners • 8 Research sites 20 research organisations 10 • 78 research organisations • 11 Sprints FUNDERS 6 20 10 • 10 training sites • 4 Catalyst projects RESEARCH RESEARCH FUNDERS SITES ORGANISATIONS • Public Advisory Group • 60 patients on COVID group >20 6 >30 8 10 12 ALLIANCE RESEARCH ALLIANCE RESEARCH FUNDERS FUNDERS MEMBERS SITES MEMBERS SITES PUBLIC 78 PUBLIC 78 8 8 ADVISORY RESEARCH ADVISORY RESEARCH HUBS HUBS GROUP ORGANISATIONS GROUP ORGANISATIONS 10 10 60 COVID patient 100 11 100 TRAINING TRAINING advisors ORGANISATIONS SPRINTS ORGANISATIONS SITES SITES | 8
We are now an institute made up of 86 organisations in 56 offices across 32 locations BREATHE Wellcome Trust DATA-CAN Great Ormond Street DRIVE Unit Discover-NOW Gut Reaction CENTRAL TEAM OFFICES INSIGHT PIONEER NHS DigiTrials BHF Data Science Centre HEALTH DATA RESEARCH HUBS HDR UK Cambridge HDR UK London HDR UK Midlands Belfast HDR UK North Birmingham Bristol HDR UK Oxford HDR UK Scotland Cambridge Edinburgh HDR UK South-West HDR UK Wales and Exeter Northern Ireland Leeds London Manchester Oxford TRAINING LOCATIONS RESEARCH LOCATIONS (Masters and PhD) | 9
With a growing community of researchers, innovators, technologists, clinicians, patients, & public across industry, NHS, academia and charities working together… | 10
Plans for …to deliver at pace… Gateway MVP announced July 2019 Gateway MVP launch with >400 First appointments One Institute datasets HDR UK chosen to made to the Board in Founding partner of UK Strategy February 2020 lead development of November 2017 Health Data Research Successful Wellcome launched – April 4-year Digital PhD Programme Alliance announced in Call for new 2019 Innovation Hubs December 2018 announced in HDR UK implements Substantive Sites programme in July September 2019 research question and Better Care HDR UK Public 2018 prioritisation process Catalysts launched in Core Funding starts Advisory Board to support COVID-19 announced – December 2019 and Call for BHF Data Science response in April Partnership HDR UK incorporated National January 2019 Centre and inaugural 2020 with NICE as a company limited Implementation Director announced announced by guarantee in July Projects launched in October 2019 New Masters July 2019 2017 August 2018 programmes announced Gateway Rapid 11 Sprint Chair of New Substantive Key senior leadership June 2019 Development Further Exemplars International Sites and Better appointments made appointments Task operational Advisory Board Care Catalysts in February – made to the Board January – March January 2019 – announced in announced in December 2018 in November 2018 2020 December 2019 October 2019 April 2020 2019 2017 2018 2020 HDR UK’s 100 th First phase of fully UK Health Data Alliance grows Open Access functional Gateway 2018/19 to 27 members Research Alliance output delivered in June Substantive Site call Annual Review DIH Programme launched with nine January 2020 Interim funding published in 2020 launched to form HDR launched Gateway MVP Design & dialogue member in received and six September UK’s research base in July 2019 developed September 2018 – February 2019 Substantive Sites start 2019 August 2017 October 2019 - April 2019 DIH prospectus in April 2018 BHF and HDR UK January 2020 launched 7 Hubs launched in Andrew Morris start work in May 2019 announced as September 2019 and partnership to First round of 2020 /21 strategic Successful applicants Milestone 1 met Director in started October 2019 develop BHF Data National delivery plan and announced forming our by all Hubs March 2017 Science Centre Implementation governance structures Industry first six Substantive December 2019 August 2018 Projects announced in March engagement Sites in February 2018 Collaboration announced 2020 events UK, US, with KQ Labs June 2019 Europe October announced | 9 2019 onwards November 2018
…and make impact at scale Our highlights from the past year | 12
Working in Partnership to respond to COVID-19
“Covid -19 — A Once-in-a- Century Pandemic?” Bill Gates New England Journal of Medicine, April 2020 | 14
We are mobilising resources and championing the use of health data to respond to COVID-19 Our three key priority areas are: 1 Co-ordinate and connect national data science driven research efforts related to COVID-19 Accelerate access to UK-wide priority data relevant 2 to COVID-19 for research Leverage the best of the UK’s health data science capability to address the wider impact of the COVID- 3 19 pandemic, supporting vulnerable groups that will be hardest hit | 15
We are operating a prioritisation process for health data research questions for SAGE – accelerating the ‘fittest’ questions… 106 health data research questions identified 36 prioritised for support and data access Questions from researchers | 16
…and reporting new research insights transparently… 86 active research studies in the national Trusted Research Environments 100 pre-print publications | 17
…making it easier to discover and request access to COVID -19 relevant datasets via the Gateway https://healthdatagateway.org/ | 18
…ensuring the views of patients and public are heard and taken on board and we are transparent with our work We are receiving input from the 62 members of our COVID-19 public advisory group, our Public Advisory Board and new lay members on our delivery groups. • Prioritising COVID-19 data research questions • Shaping our advise to SAGE • Advising on COVID-19 research projects – e.g. the risk calculator ‘OurRisk.CoV’ • Sharing questions and concerns on accelerated data access | 19
Increasing our knowledge of this devastating disease and how to treat it Examples The RECOVERY trial has used data to establish there is no clinical benefit of hydroxychloroquine in hospitalised patients Data from the Symptom Study App identified loss of sense of smell and taste as a recognised symptom of COVID-19, influencing UK government policy Use of data has shown the impact of COVID-19 on vulnerable people with health conditions, including those with cancer and heart disease | 20
Scaling this up to a global response Launching today: International COVID-19 Data Research Alliance and Workbench | 21
To unite data from international clinical trials, biomedical and health research to enable discoveries that Vision benefit all people, everywhere, by reducing the harm of the COVID-19 pandemic. To build a trustworthy international partnership and enduring data infrastructure to support a rapid Mission response to the current COVID-19 and future pandemics across the world. | 22
Initial partners “start small, think big, move fast” FUNDERS ALLIANCE PARTNERS TECHNICAL EXPERTISE Bill and Melinda Gates Foundation African Academy of Sciences Aridhia Chan Zuckerberg Foundation BREATHE Health Data Research Hub Mastercard Mastercard Generation Scotland Novartis Pharma Minderoo Foundation Genomics England SAIL Wellcome Global Alliance for Genomic Health SeRP (Secure eResearch Platform) HDR Network Canada Infectious Diseases Data Observatory (IDDO) | 23
Thank you for listening For further information: www.hdruk.ac.uk enquiries@hdruk.ac.uk @HDR_UK | 24
International approaches to combatting the COVID-19 pandemic – how have data and technology been harnessed? Chairs: • Rhos Walker, Chief Science Strategy Officer, Health Data Research UK Panellists: • Andreas Poensgen, Managing Partner, Turgot Venture • Effy Vayena, Chair of Bioethics, Swiss Institute of Technology • Teo Yik Ying, Dean of Saw Swee Hock School of Public Health, National University of Singapore Please use the Q&A function to ask questions to speakers. You are welcome to comment using the chat function, but we cannot guarantee this will be monitored.
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